Purple Day, Seize the Moment and I THINK I’m doing a good thing…

Purple Day 2010 has come and gone.  I feel like I’ve educated at least a few people, if not to what epilepsy is, at least to the plight of those who have epilepsy… I wish there had been more time between when Squirrel was diagnosed and when Purple Day is… I feel like I could have really organized something effective if I had had just a little more time.  NEXT year I feel like I could do something bigger, better… I just need to really start thinking now.

I SO much want to thank everyone at work who wore Purple in support of the Squirrel.  I will post pictures soon… It meant an awful lot to know who noticed and to realize that I kind of matter… that I can somehow make a difference.  It made me smile and it made me cry because people really care… they cared enough to wear purple just because.

I’ve been in contact with the Purple Day people and the Epilepsy Foundation people.  I think that the first step will be to be working on getting the first annual Seize The Moment race up and running in Austin.  THIS is last year’s website for the San Antonio and Brownsville races from last year.  I’m hoping that this year’s race doesn’t conflict the the Komen Race For The Cure in Austin… I think we would loose a lot of people to that race if we were at the same time.

I SO don’t want other families to have to go through this… the fear… the worries… the way that life changes when someone has a seizure… the way life changes when you have the diagnosis of epilepsy.  I don’t want other kids to have their teachers treating them differently or their friends looking at them like they are suddenly different just because once in a while their brain decides to short circuit.  I want people to understand that epilepsy isn’t going to jump out and get them… it isn’t like Piggy Flu and they can catch it… it can be scary (okay… it can be way way scary) to witness a seizure, but the person is still who they were 10 min before.

I want Amandya to know that I want to make a difference for her.  For her and for every single person who has to deal with all of this… deal with the fear… deal with the side effects of the meds… deal with the changes… deal with the stupid stigma that other people stick to you.  I know she isn’t thrilled about her being in the limelight… I know she is terrified that she is going to have to talk in something like the council meeting.  I hope she knows that I’m doing this because she matters.   She would probably rather something be “wrong” with Adam so I would be taking up that cause and keep her from having to be out there… but I know she is liking the attention and I know that she really would do good with learning the leadership and self confidence that  being active in a cause will bring… and not just someone else’s cause, but her own.

People keep telling me that I’m doing a good thing.  I don’t know if I am or not.  Sometimes I really really wonder.  I don’t know why what I’m doing is a big deal.  I’m just being my kids’ mom… I’m trying to be there for them… to make sure that what matters to them matters.  Trying to make sure that other people don’t find them in the same situation that we’ve found ourselves in when she had her first ones and I was trying to find information that was from real people about real situations…

Like the fact that, especially if you aren’t a “child” with epilepsy and you suddenly develop it when you are a teenager… and your teachers either don’t know what to do for you in case you have an episode in their class… or they are so rattled by the fact that you are now somehow different and they treat you different than they used to.

it is all something that I just feel like I have to do…

am I wrong to try?

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1 Comment (+add yours?)

  1. Squirrel
    Mar 27, 2010 @ 20:23:12

    Not just the teachers even some of the people i use to be close to are more distant from me & it makes me sad 😦

    Reply

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